Wednesday, December 27, 2006

Lessons from 2006

Here are some things I learned or had (re)confirmed this year.

1. DDS is so angry at my writing about self-direction that they dropped CADDIS during my vacation to make me look stupid.
2. People with a taste for real change aren't always who you think.
3. System funding is as much an emotional issue for people as it is a practical one, but chocolates and flowers would be cheaper and more helpful.
4. "Efficiency" is a word people love to say and hate to hear.
5. "Accountability" is another.
6. Connecting people is the heart of every important reform.
7. The job of helping people with disabilities to live more fully is still worth doing.
8. The job of changing our system so it helps people with disabilities live more fully is most glorious because it is so unlikely.
9. Some people think living in solitary idleness in your own home is so much better than living with friends in a segregated setting that no one would ever choose the latter even if it came with a large stipend and DSL.
10. Saving the current system and funding it better is an errand for a superior and more committed fool.

Wednesday, November 29, 2006

Further on the topic of choice

On the topic of choice, I have expressed some opinions. I would like to elaborate on a related issue. In weighing the relative merits of choice and integration, I still remain committed to the idea that choice should trump and that neither the State nor Regional Centers, nor agencies have a compelling enough interest to push integration on those who prefer to live and receive services in a segregated system.

That said, after hearing a very compelling speech just yesterday on the topic, I also agree with two embellishments on that position.

The first additional point is that the boundaries of choice as a policy goal may vary in the advocacy of different people, but these distinctions are philosophical not moral. I may disagree with those who believe the state should differently fund integrated and segregated services in order to support the choice of integrated services, but I do so on practical grounds and with no truer compassion or greater honesty than those who take the opposite position. To the extent that state, regional center or agencies believe they have a compelling interest in limiting choice to a more integrated environment, it is appropriate for those entities to better support integrated services than segregated ones.

The second additional point I'll confess is that I agree absolutely with value-based funding as an improvement on the collossally irrational system we have now. I also agree that the supports necessary to sustain people with developmental disabilities in integrated lives are more valuable than those that support the same individual in a segregated setting, given that the former is harder to accomplish. If integrated services were to receive biased funding in their favor on the basis of value rather than cost, I could support such a policy.

OK, satisfied, J? And I posted in November, too.

Friday, October 13, 2006

Self-Directed Services (SDS) Regulations, an update.

The Community Services and Supports Branch of DDS held the second of a string of meetings with various specific stakeholders on Tuesday in Sacramento. There is to be a general stakeholder meeting on October 25 in Sacramento and a series of three teleconferences before the proposed regulations are filed with the Office Administrative Law which is planned for the dawn of the new year.

The first thing to be brought up in any discussion of SDS is the fact that it is currently linked in statute to the computer system CADDIS coming online. What has passed for progress with CADDIS is that in 2001-2004 DDS pushed back the "live" date by one year annually and in 2005 they pushed it back by a month every 30 days. They are backing up by a year, maybe, three times per annum so the true process for implementation of SDS almost certainly looks like this:

January, 2007 the regulations are to be filed with the Office of Administrative Law for a one-year process of acceptance.
January or, maybe, April 2008 the regulations are enrolled.

May, 2008, the live date for CADDIS is estimated to be March, 2010 and trailer bill language is sought to alter the statute so that SDS can be implemented following changes to the current data system and the roll-out date for SDS becomes January 1, 2009.

Summer, 2018 the necessary changes to the current SANDIS data system are completed and an entirely different set of regulations take effect.

All of that said, I can offer a few impressions of the current state of the regulations.

First, the budget setting methodology has been fairly well articulated. I'm not mammothly impressed by the statistical methodology on the surface but in fairness, I have no idea what was tried and how it worked. A demonstration of the methods and charts of the underlying data might lead to the conclusion that the methods were wholesome and fair or offer the community at large a means to improve them, apart from our instinct to just make everything more expensive where possible.

Notably, DDS has separated durable medical and environmental adaptations from the initial budget calculation to allow people who need long-lasting equipment to purchase that without fear of depleting the budget for ongoing needs. That was a smart and positive change. Unless such expenses are with-held from the calculated averages that make up one of the available budget methodologies, the cost-savings from SDS might be diminished and cost-savings will be important toward sustaining SDS.

Also, the readiness of the regulations was not what I might expect from something two months from filing. There seemed to be a lot of discussion points and items DDS seemed ready to reconsider. This suggests one of two things:

Either the meeting was something of a placebo with sincere intention to make improvements but also the willingness to make notes in the draft at more points than staff was willing to alter; or

There is no right version where the community will be happy and changes will continue to be suggested until we are all dead, which would suggest the previous possibility as the smartest strategy.

In either case, there are two new areas where I would have concerns somewhat more compelling than my usual flippancy:

1. In the eligibility requirements there was a disagreement between staff and some of the attendees whether or not the requirements in the regulations were more restrictive than in the underlying statute. As a historical note: During the discussions convened by Senate staff, the original DDS proposed statutory language contained this: that the eligibility criteria include, but not limited to. The Senate staff made clear that the "but not limited to" would be dropped in the statute and it was. The history is important because it makes clear that DDS was not meant to be empowered with the right to tighten the the eligibility criteria. For this reason, I think it is only appropriate, as long as there is controversy about the meaning of the regulatory language, to use the statutory language verbatim in that section. It will, after all, be the interpretation of the individual regional centers, not the intent of DDS which govern the implementation of regulations in nearly every case.

2. The "accountability system" as it is currently constructed seems to be as fraudulent as the one we now "use." In the current draft of regulations it will be the responsibility of the SDS client to submit an evaluation of vendors, which would be a wonderful thing to do if and only if the requirement to evaluate is enforced, something the current regulations offer no mechanism for, and the evaluations are aggregated and easily obtained, something else the current regulations offer no mechanism for. I would strongly urge DDS, if the authority exists in statute, to provide for a useful reporting system on quality. Granted, one of the virtues of SDS is the ease with which individuals can fire unhelpful supports, but a far more helpful method of improving quality would be to allow SDS participants some method for identifying those providers most apt to provide helpful support. If that cannot be done under existing authorities this requirement ought to be struck as a useless intrusion on the client's time.

Related to this second point, there are some elements, SIR reporting by unvendored providers comes to mind, that seem unenforceably mandated. Unenforceable mandates tick me off.

Two where the regulations seemed surprisingly strong:

A. The budget allocation process is magnificently transparent and predictable which will make it easy for potential participants to judge whether or not they will be well-served by SDS and which method to choose. There can't be three other sections in Title XVII as well-designed. That said, and as noted above, the right method for developing the actual funding attached to the process will make the difference between SDS being popular or almost unuseable.

B. The descriptions of the Financial Management Service, the role of regional center personnel, and the assignments of service providers are less overdefined than I expected them to be, compelling me to partially and semi-sincerely apologize for my previous post. In my opinion, DDS still erred on the side of over-regulating but not by as much as I was prepared to rant against.

On a whole separate note, I wish to grouse that those who pressed for eligibility criteria to exclude people receiving services in congregate settings will regret that decision a year or two after SDS rolls out, should they be blessed with world enough and time. I still believe that the effect will be to minimize community integration as a byproduct of the new system. That error being now enshrined in law, there isn't much to be done about that but whine, as I do here.

Friday, September 29, 2006

Self-Direction, Finale (for now)

To those who have noticed and inquired and thank you to those that have, I thought I'd wait until the new self-directed services regulations come out and then fume about how prescriptive they are and how they over-regulate while under-protecting the enrollees. I thought the new regulations would be out by now. That much I was wrong about.

Wednesday, August 16, 2006

Organic farming and row crops.

In some ways, the DDS system is the future of effective government, depending on entitled rights and an engaged private sector to serve the needs of a challenged population. The mission of the whole edifice is to sprawl, broad and variable enough that each person served can find their own access point to the help they need for their challenges and aspirations. An organic approach like this parallels innovations in the business world where individualization has proven more efficient in many scenarios than the standardization that the industrial revolution brought and maintained.

The culture of government, however, has trouble with risk and risk is synonymous with variation. So, having envisioned an ecology of support, the organs of government soon fall back to establish control and order. Instead of encouraging relatively unfettered innovation, the regulations develop over time to specify the types of service available and to constrain the freedom of the service providers, rather than specifying outcomes and allowing competing and co-existing models for delivering such. For example, if you compare the older regulations governing Independent Living Services with those governing Supported Living Services, their are significantly more barriers established in the latter. Consequently, individuals who would be classic supported living clients may receive Independent Living Services instead as a result of, perhaps, economic or health risks which result in sometimes leaving apartments to stay long-term with family.

Over time, the instinct at regional centers has often been to harden and sharpen the distinctions. For example, to deny any individualized living support or training to individuals who live with their families or in group homes, which often has the effect of limiting people to their current setting. The consequence has tended to be to regiment the people served rather than to liberate them.

Tuesday, July 25, 2006

Essential Lifestyle Planning as polytheism

Essential Lifestyle Planning (ELP) is a conceptual name given to a category of thinking and doing in the social services also called Person-Centered Thinking (PCT.) Blogging from the 2006 ELP Trainers Conference, I can report that this remains to me an intriguing, flexible and useful line of work. Agendas from the conference and some shapr insights that I hear here are being posted on the East LA Vendor Learning Community weblog.

One of the concerns that I have had and continue to have about the change process is how we prevent person-centered thinking from locking in as a secular faith. There are many holy words in PCT, rites (tools,) and styles of worship. There are anointed clergy, renegade evangelists and false prophets. The concern is that so much of every religion is hypocrisy and one of the challenges we face is how not to be superficially devout.

I have no doubt that person-centered people-first language and rigorous use of the tools can produce lives as restricted and support as meaningless as is currently practiced in our worst instutions. At the end of the day, the change we seek is to listen and respond and provide meaningful assistance and nothing about ELP makes that inevitable unless we're listening, responding and providing meaningful assistance. I have no doubt this religion will continue to spread and evangelize, but I wonder who will be saved.

Monday, July 10, 2006


Maybe, Doug Antagonistes. There, that's pretentious. Anyway, Greek really can make a fool look smarter.

I have been informed recently that it is a little confusing trying to guess where I will come down on a given issue, particularly when it comes to new regulations. I thought now would be a good time to restate the first principles of reform as I measure them.

1. Choice Trumps
Most everyone involved in California's Developmental Disability System agrees on three things: That people with disabilities should live lives based on their own choices, that people with developmental disabilities should be fully integrated into their communities and that the health and safety of a served individual should be protected. Even a reprobate like me agrees with all three of these principles.

Not long after becoming a part of this system as an Uncle and as an executive it became clear that on a great day or with an extraordinary client, these three principles work together in perfect harmony. Most of my professional life, however, there are conflicts between two or all of these principles. In extreme situations, like a human locked in a box or someone with frequent seizures and a history of depression wanting to take a handgun hang-gliding, the conflict can be fairly easily resolved. When the distinctions are fine, however, I think we all demonstrate that one of these values is a moral imperative and the other two aesthetic preferences.

In the end, I find that client choice is where I won't give. Integration is important and should be a choice, but what of those people who don't choose integration. If what we call disability is to be seen as many of us would like it seen, as part of the normal diversity of humanity then people who neurological diagnoses are essentially normal and belong to a minority. When other minorities choose to live in communities where they belong to a local majority, this is generally considered ok. It should be with our clients as well. On health and safety, in extreme circumstances intervention is necessary and desireable as it would be with an alcoholic relative or a suicidal friend. However, like in those examples, it is important for the intervenor to establish that the individual, were they fully aware of all factors and able to implement a wise choice on their own, would behave differently. The default has to be in favor of an individual's choice.

I honor, but often differ on policy matters, with groups which hold health and safety or community integration as their most important policy goal. This frequently puts me at odds with my friends over the closing of Developmental Centers and the appropriateness of congregate services. When I disagree with CAIC or PAI, it's typically on this point.

My policy: When in doubt, choose humility. Because I told you to.

2. Err on the side of under-regulation.
When talking about policy, there is another matter to consider: Statewide laws and regulations can never take into account the idiosyncrasies that make up most of the matter of a human services system. In my own little imagination there is a formula. Since I made a pun of Agonistes above, I get to call this formula, Doug's Law: The formula for Doug's Law holds that 1 divided by (10 to the power of X)+1 is the likelihood of a decision being correct where x is equal to the number of intermediary reporters between the person affected and the person making a decision. So, a decision made by direct care staff has a 50% chance of being correct for the person served. A supervisor making a decision based on the advice of the direct care person has a likelihood between 8-9% of making the right choice. Regional center policies probably provide the right solution around 1 time in a thousand and DDS about 1% as often as a regional center. Executive Directors of agencies would get it right around 1%-.01% of the time if they weren't so pitiably stupid. There is no empirical evidence to support Doug's Law but it sounds right and anecdotal evidence abounds.

The upshot of this is that regulations that sound morally correct are very rarely right in implementation. I lean heavily toward reform which relaxes regulation in favor of accountability for outcomes. Specifically, risk, reward and oversight (verification) should be the guiding principles of the entire body of law by which the state manages this system. I honor but differ with groups that frequently propose or favor regulations which serve to bound decisions made by people who would not recognize the proponents in the criminal line-up which many should be standing in at any given time. As a consequence, I frequently disagree on policy matters with organized labor, most large advocacy groups, and many parents' groups on matters concerning regulation of agencies and regional centers, and I tend to disagree with regional centers on the value of POS policies as guidelines.
My policy: Support insuring outcomes and leaving process to chance. Plan to follow.

3. Put the cart before the horse.
Almost everyone I know agrees that outcomes are all important and almost no policy is ever proposed or implemented that doesn't directly controvert this principle. Every time a "best practice" is mandated, every time a proposal comes forth to prefer one mode of support over another, every time wages are legislated the assumption is that this will help clients live lives that are meaningful to them and yet the 200,000 or so people aren't often asked by policy makers what is meaningful to them or what help is needed.

Separating a person served by our system from the most appropriate support is massively inefficient, because money is spent on something that doesn't help as much as an alternative. No one handy suggests a tool before they know the project and yet some groups annually propose to alter the landscape of available services without ever learning what help is needed by whom for what purpose except anecdotally. People whose primary language is neither English nor Spanish nor spoken are rarely heard from even anecdotally. Once again, the real accomplishment would be to see that every person served makes progress towards life as they would choose it. Given that nothing useful is ever measured in our system, I could not be more certain that it is possible to mandate any service mode now vendored or imagined at any funding level without helping anybody.

Aesthetically, I don't like congregated services. To the (statistically nonexistent) extent that my niece's Uncle Doug will advise her service decisions she will never even look at a site-based day program or a group home. But still, as in item 1, I don't believe any person born with disabilities should suffer further because of my good judgement and moral vision. If the system worked right, and I am right on the unattractiveness of congregant services, most such programs will close and the rest be genuinely needed. While I cannot picture a stranger (or my niece) working in a site-based work activity program and be happy about it, it's actually fairly easy to imagine someone who, for some time, would benefit more from such a program than any other type. Just off the cuff, someone with significant anxiety towards the community at large, no existing work skills, normal fine and course motor control, and treatable behavioral issues might succeed in a WAP setting to prepare for more integrated and more meaningful work, while that same person might fail repeatedly without that preparation.

Some of this inefficiency actually harms clients as opposed to just wasting scarce resources or not helping as much as possible. When process becomes the focus, the goals of the client can be adversely affected as easily as neglected.

Again, I honor but often differ with people (nearly everyone I like) who would use state or regional center policy to determine broadly which forms of service are available to the community at large.

My policy: Support letting the design and prevalence of supports result from their success meeting the real needs of individuals, even if the result is more of format I don't like and less of what I personally sell. As a matter of policy.
Oh, and happy second anniversary to this blog (last month.)

Monday, May 08, 2006

Why transparency matters

Transparency may be the most underappreciated feature of a strong system. Every day system stakeholders experience the ability of bureaucrats throughout the system to stretch the letter and spirit of existing statute and regulation. Often, those innovations are flexible solutions to situations not foreseen in the development of existing law. Often the experience is of a misrepresented regulation for the purpose of saying no to a flexible or compulsory solution.

The more that DDS, Regional Center and Vendor actions are exposed to sunshine, the more likely flexible solutions will be applauded and inappropriate denials of rights will cost the decision-maker. At every level of the system from the legislature to the quality of breakfast in a group-home, people with disabilities benefit from the various agencies understanding that the quality of their work being widely known and understood.

I offer an additional point, my own theory. I do believe that control must be balanced with the organic process of policy-making. Because most decisions are made in the dark by people alone, each of whom most often prefer to be in control, I expect that the system of support for people with disabilities is massively out of balance on the side of rigidity. An open dialogue can massage that stiffness and restore some of the flexibility the developmental disability system in particular was wisely designed for.

The CDCAN initiative to enable journalism by system stakeholders is so important. The fact that anyone's actions may be the subject of a webcast marks a major change to the milieu in which professionals act regarding disability rights and opportunities. Along with the teleconferences which highlight the micro-effects of macro-policy, CDCAN is the largest part of a systemwide push for greater transparency and through that, greater accountability and better decision-making.

CDCAN is not intended to be, nor should it be the only agency expanding transparency. At the local level support groups, boards of directors, blogs (God help us,) and other networks have the opportunity to make transparent local and even individual policy-making and action.

A note about client and worker confidentiality. The right of the individuals involved in this system impedes transparency but also represents a crucial element of the dignity of the individual. Efforts to increase informal information-sharing and public awareness of what actually happens in the system need to consider the importance of privacy and privacy-protecting law. That said, two principles should be remembered: The freedom of the press is enumerated in the constitution and, therefore, no law or regulation can impede the right of people to seek information regarding public decision-making and to publicize the information obtained is superior to every confidentiality provision on the books. Second, confidentiality is the property of the person the decision regards, not the professionals participating. There is unlikely to be a legal offense where a person wants their story told.

Update: Chris Thompson has left a link to a site he writes with a partner on transparency as a communication tool. Click here to read about why transparency matters.

Thursday, April 20, 2006

Money and Reform

Lately I've been getting crosswise of friends, colleagues and conspirators over my baffling opposition to better funding for our system. I thought I'd clarify to you, dear reader since I feel kindly towards you unlike those rascals. But, I do believe this as well: The gap between how the system functions and how it should is greater than the gap between current funding and optimum funding. Add to that the great truth of life and government: that money is the enemy of reform.

It's not so much that I believe rates are high enough, but that I suspect a lot of funding isn't helping people with disabilities. I don't know how much, but I further suspect that much of the wasted many is not otherwise neutral but harmful. Redundant people signing off on client's choices. Quality evaluations that serve no particular purpose but around which client lives and agency practices are disrupted. Fiscal controls which repeat other ones and serve as a break on the system's ability to respond to change, challenge and opportunity. Systems of accountability which can be safely ignored by participants but which, again, disrupt beneficial processes.

It's a funny thing to me: All the best advocates I've known, when near home complain about dismal behavior by regional centers, scurrilous crimes by vendors, the lack of challenge for success. The lack of punishment for failure. And yet, we arrive in Sacramento and face the legislature and administration and say "we need more money," not mentioning any of the problems that bothered us in our homes and businesses.

I do believe the following:
*Self-perpetuating boards implementing public entitlements was a bad idea and has produced predictable consequences.
*The fact that all information regarding the quality of support options is universally not just subjective but idiosyncratic and anecdotal produces inefficiency and limits rational choice well beyond what any end user or tax payer should have to bear.
*Some massive amount of creativity is squelched by fear-driven decision-making by people marginal to the life of the end-user.

If all this is true, then to focus on funding over reform betrays everything we claim to believe and everyone we say we love in this system.

Wednesday, March 22, 2006

This year's cost containments

Demonstrating either my clairvoyance or my willingness to talk about matters I know nothing of, a few comments on the cost containments to be proposed by DDS this Spring. It's my workup for the California Disability Community Action Network teleconference so those of you with good fortune to read this before the teleconference will know what I'll say, and those of you listen to the teleconference first can quit reading now.

The cost containment mentioned in the Governor's Budget may include new contract language for regional centers requiring certain Purchase of Service decisions to be made in a certain way. For example, the low-cost provider able to meet the needs of the consumer shall be used and, where appropriate group services should be used rather than one-on-one services. On a common sense basis in which the words appropriate and need have their usual meanings and include a respect for important preferences, this should already be the case and isn't. In that regard, I'm tempted to agree with this proposal.

On the other hand, the first requirement of citizenship is to disagree with the administration and I do. Confidently. Two perspectives seem very difficult for the Department, which make disagreement not only possible but easy.

On the one hand, regulations and statutes and contract language have very little to do with service coordination except in cases where they amount to no and that seems like the better answer to the regional center decision-maker. Many of us here the once-proposed requirement to prefer group settings where appropriate and imagine that it will be quoted and followed faithfully always and only where inappropriate. The low-cost provider who meets the client's needs will be the provider at whatever cost who meets the service coordinator's needs or no-one's. I'll wager that no end-user of this system or vendor will find my claims here controversial or exaggerated.

The second, and more essential perspective missing from this proposal is the understanding that regulations are most often sources of inefficiency and poor outcome. When our system works best it provides a continuum of support to clients that reduces the need for supervision, future assistance and expensive support by assisting the individual to make choices. This is the most cost-effective behavior in our system where the client lives fully and the taxpayers save money. Any regulation, including contract language, of that process inhibits creativity, innovation and motion along this path. Proposals like the one I expect are as likely to freeze a client in an unchosen environment at needless cost as they are to save money.

Thursday, March 09, 2006

Back to Self-Directed Services

Many of us are looking forward to the implementation of Self-Directed Services (SDS) in 2007 or 8 or 11 or so. Of course, all of us looking forward to that roll-out are assuming that when SDS rolls out, it will include self-direction as one element of the program. Just to honor the name and all. Here are three questions:

1. Will the roles of Service Brokers and Regional Center Staff be clear and separate? Service Coordinators (SCs) have for a long time expressed strong preferences towards what services and agencies clients receive support from. This makes a Service Coordinator a valuable resource to clients who are uninformed, indecisive or dependent. For self-directed services to live up to its name, an almost complete divorce from the service coordination function would have been optimal. In the case, it is at least necessary to redefine the role of the SC in a way that will not occur naturally, to make room for the new autonomy given to the client and to allow the service broker to be valuable. I would recommend a prohibition on SCs discussing matters appropriate to the role of the Service Broker.

2. Will the oversight of the SDS program support or inhibit the control of the consumer? Assuming that there will be accountability in this system (a boy can dream) it will be important what measures are tracked. Such indicators as level of integration, generic social network, and level of employment are great social goals but can't be assumed. Some people with disabilities prefer the company of other people who identify the same way. Some people find paid work less rewarding than volunteer work. Granted, SDS is an integration program in self-determination drag, but some accountability for the misnomer should require that clients be allowed to choose their own objectives and that no-one be incented to deflect or undermine those choices.

3. Will this system manage risk better in SDS than it does in the Regional Center system? Autonomy means nothing without the availability to take risk, and no plan is person-centered without an understanding of what chances may be taken and which won't be. Under the current system the assumption is that risk is good unless something goes wrong and then it was bad. Will the SDS include a new view that lets the individuals served choose which chances to take, and enjoy the results. Those of us who are eager to help people through SDS program plans will depend on the idea that if our jobs are done well and the client experiences an adverse result from an informed choice, that we won't be buried with the emperor.

I'm pessimistic that I know how these questions will be answered. Doesn't hurt to ask 'em, though.

Tuesday, February 21, 2006

Oh, I said I'd write weekly didn't I?

My new friend, PARCA writes a blog advocating Regional Center Reform. He and I agree on a lot, and I was reading his site today, where he reminded me that I haven't ground my accountability axe recently. Shame on me.

Accountability is a massive deficit in this system. How much money is spent on needlessly restricting clients, providing useless services through feckless providers, choosing costlier options to superior ones, adding layers of bureaucratic duty or regulation unaccompanied by better outcomes? I don't know and neither does anyone else. So a lot, no doubt. Lest someone accuse me of regional-center bashing, I do hereby confess the lack of accountability is systemwide and applies to vendors, regional centers, pretty much anyone taking a penny under the DDS line item. My own belief is that the lack of accountability probably does more harm than the lack of funding to consumers.

The big picture need for accountability requires a systemic, thoughtful approach and drastic reform. But here's something we can do today:

A low-cost, drip-dry way to improve the oversight in our system would be to improve transparency. This can be accomplished with a little care for confidentiality by the magic of carbon-copying. As a matter of policy, any communication sent to a provider agency can be cc-ed to their vendoring regional center. Any communication sent to a regional center, if clients' names are redacted, can be cc-ed to the Department of Developmental Services (DDS) or the Centers for Medicare and Medicaid Services (CMS.) Any communication sent to the department can be sent to CMS as well.

It's a poor substitute for a system of outcome measurements that defers to choice, but I'll wager it would help in the interim.

"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God." -Phillipians 4:6 (KJV)

Thursday, February 09, 2006

A New Blog

The Vendor Leadership Forum (VLF), a subcomittee of the Eastern Los Angeles County Regional Center Vendor Advisory Committee (VAC,) has established a weblog as part of its effort to form a learning community and to be transparent to the community.

This new blog (linked permanently at left and in this post above) will open up the progress, challenges, milestones and planning of the VLF for information and feedback. The members of the VLF will all have the opportunity to describe the journey, the scenery and the adorable natives we meet along the way. We invite all of you to read and comment there.

Wednesday, February 08, 2006


I think our system has a funny relationship with administration. On the one hand, it's almost a tenet of faith that administrative costs deprive the clients. On the other, the State and Regional Centers sure seem to come up with a lot of ideas for vendors to do more of it. There are a few things that stand out to me about the role of administration in our system.

The first is this: Our system derives its efficiency and effectiveness from the individualism in the service planning. In theory always and in reality sometimes, services provided are so well matched with the client and his or her situation that there is no waste and yet every disability-related need is met. OK, right, but the point is, the matching of service to need and the flexibility to treat each client individually clearly requires more management that one-size-fits-all solutions. Add to that our emphasis on integration and services being located in the home and in the community and it becomes clear that the quality-assurance and communications functions of administration are more demanding and more productive than in standardized, facility-based models of care.

The second thing that stands out is this: Administration and management interfere with the process by which individuals and their staff find their own way. Quality Assurance, service planning and coordination are all interventions in the organic process of person-centered support. Administration may be necessary or beneficial but it can easily be stultifying, invasive and counter-productive. Like this entire system, cost-benefit analysis should be applied to both administration and the regulations and policies that promote administration to make sure we do the optimum amount of administration the best way possible. I should clarify that by analysis I mean analysis and nothing that begins with "I think" like this post did.

Tuesday, January 24, 2006

Choice and Choices, Part II

The process of filtering the client's IPP through vendor codes has two major costs. The most important is to the well-being of the client. This post will explore the less important cost, to the efficiency of the system.

To recap, the process of planning and purchasing support in California's developmental system begins with the client, those the client cares to have input and the service coordinator from the Regional Center, as well as any professional support providers in place to review the clients preferences, their disabilities and to plan for whatever support will mitigate the effects of the disabilities on the individual's aspiration. Good start if done correctly.

The next step is generally to attribute the supports to certain vendor codes based on matching needs with codes, but primarily based on Regional Center POS policies. At this point, the plan becomes centered on the vendors not the clients. The efficiency cost is this: If the POS policies are taken as gospel and they too often are, there can be a gap in resources which can only be bridged by purchasing the wrong support for too much money.

Here's an example off the top of my head but not theoretical. If a Regional Center tries to contain costs by limiting units of service available based on vendor codes, one can imagine (or name) a client whose needs exceed the provisions of the POS policy. If, as often happens, the regional center seeks to maintain those policies rather than make an exception, a client can fail to live in their own home, leading to a group home which leads to a day program which typically requires transportation. The result is, and this happens frequently in this system that when $5000 per year in support doesn't suffice to maintain a client in their own home, plan B costs closer to $40,000 per year while providing the wrong services for the client.

The response often made by people defending POS policies by vendor code is that they make exceptions when following the policy will lead to the client's living in a more restrictive setting. Heck, we're required by law. Anyone who works directly with clients knows how rarely this is the case. We go through this process. There is typically a long road into crisis and a longer one back from the brink. Clients in our program have died, ruined their credit or lost their health before the evidence that the POS policies were deficient became clear enough for the exception. The client who died now costs the State nothing. The others now cost the state roughly 6-8 times what the adequate level of support would have cost.

The result is that the system does not behave like a continuous array of supports to be tailored to the client's needs and preferences. It flows like lumpy oatmeal and people get involved in day programs they neither need nor want because the group home they didn't want to live in requires it. This is a costly problem that merits fixing for the sake of the budget if not for the sake of the clients.

Wednesday, January 18, 2006

An announcement

Square Girl has generously agreed to write for this site. It's a big upgrade. Square Girl is a provider of Applied Behavioral Analysis to children with autism and a dedicated learner from them. Her blog, Girl Squared offers both the humility and cheerfulness that I simply can't provide you. Her analysis is very humane and compassionate and I can finally look forward to reading this blog myself. As a direct care provider, Square Girl has been recently confronted with how systemic dysfunction further challenges the children and families she supports. I recommend her site for wit and wisdom about her direct care service and look forward to the same regarding her perceptions of California's developmental disability system.

Part II of Choice and Choices will be up about the time I get off my dead butt and write it.

Thursday, January 12, 2006

Choice and choices, Part I

One of the great interruptions in the quality of lives of people with developmental disabilities, and a barrier to the efficiency of the system is the frequent failure to provide services on a continuous spectrum. The initial concept behind the Individual Program Plans (IPPs) is to assess the needs of the client in order to provide exactly what is needed to mediate the effects of the disability and provide for a meaningful life in the community. It's been widely agreed that the IPP is the central administrative and regulatory event in the provision of services in California's Developmental Disability System.

The IPP is designed to take into account the nuances that every individual brings to their own assistance. The client is expected to be both the central object and leading subject in the development of their own plan. The IPP carries every aspiration that well-meaning people have for useful service and every hope the taxpayers have for an efficient system.

Once the IPP is complete, however, the plan typically loses most of it's meaning as Service Coordinators try to allocate the meaning from the client's plan into vendor codes. Vendor codes represent modes of providing services and allow the delivery system to be regulated according to function. Most Regional Centers, often influenced by their vendor community and to a lesser extent, their clients, typically establish Purchase of Service policies (POS) based on restrictions on who can receive services from which vendor type under what circumstances and to what extent. This system offers efficiencies for the administration of a Regional Center but is just as clearly inefficient for the support of people with disabilities.

The processing of needs into codes might not be fatal where the understanding is, as it is in law, that the POS standards are guidelines for arranging things of lesser status than the POS. Essentially, the deal statute makes with the Regional Centers is: Set up your POS policies and if you can meet the client's needs within them great and if not, you must exempt the client from the policy. That's not the deal typically made between Regional Centers and clients which can often be summarized as I understand that's what you need, let me see what I got. I'll look at the POS policies.

Vendor codes makes sense to me. To assure minimum quality standards, it is necessary to regulate agencies and the vendor codes allow that to be done appropriately for broad categories of modes of service. For example, it is generally inappropriate to have three ILS clients being served by one staffperson at a time whereas at a site based program, the minimum appropriate ratio might be higher than that.

But given that services are placed in broad categories, keeping faith with clients and their IPPs requires that these categories be understood as ranges on a continuum not as separate and distinct modes. Seeking to fulfill a client-centered IPP with vendor-centered service purchasing betrays choice by limiting choices.

Tuesday, January 03, 2006

My (advocacy) New Year Resolutions

Resolved, in 2006 I will:

1. Not lift one finger if the only motivation is to save the (present) system;

2. Be open-minded and constructively engaged in any system-reform proposals.

3. Continue to study, implement and support the development of more efficient and client-centered service delivery;

4. Be even crankier than last year except toward clients and ¡Arriba! employees. I want to break the record.

5. Assist CDCAN in the development of it's statewide network.

6. By the end of the year not be an officer of any board or committee, except the Pomona Valleys Foundation.

7. Kick an innocent child. Insult someone important. (By January 31)